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I am looking for some immediate advice on my husband's Lyme diagnosis. Hopefully we are still early enough to whip this thing!

May 30, 2006: We were at our lake cabin and Bruce noticed a circular rash on his chest and he remembered pulling a small piece of a tick (he thinks?) from the same area a couple of weeks previous, maybe mid-May. The rash looked like ringworm to me and he had no other symptoms, so we decided to wait until we went home to Louisville on Sunday to have it checked out.

June 4: Two doctors at Prompt Care confirmed that it looks like Lyme Disease. They told us that Bruce would probably feel worse before he felt better, but if Lyme disease is treated with antibiotics such as doxycycline, symptoms usually go away within 3 weeks of treatment

June 9: Bruce was feeling pretty lousy, but went to see his regular doctor to let her confirm the diagnosis and the meds prescribed. She agreed, based on the bulls eye rash, and she confirmed that he was taking the right dose of Doxycycline -- 100 mg twice a day. She also ordered blood work to confirm the Lyme Disease.

June 11: Bruce noticed two small patches of blisters to the left of the tick bite site, but no pain. We looked up Lyme Symptoms and learned that you can sometimes have rashes away from the tick bite so we just thought it was another symptom and ignored it.

Bruce continued to feel bad -- weak, lethargic, achy joints, low grade fever, and then on June 12, he began to feel so nauseous he couldn't even keep water down. That night, we went to the ER to get him rehydrated and some phenergen to stop the nausea. We weren't sure if this symptom was from the Lyme or the strong antibiotics. We were released home the next morning and Bruce slept most of the day and seemed to begin improving from that point on.

June 15: Bruce said that he felt good enough to make a planned trip to Des Moines for his Uncle's 80th birthday and it went surprisingly well. Other than a few brief bouts of nausea, Bruce seemed to be growing stronger each day, although he still tired easily. We flew back home on Sunday, June 18 and Bruce went to work on Monday.

June 23: Bruce went back in to see our family doc for a follow-up and she told him the Lyme tests she did on 6/4 came back negative. Maybe we did them too early? She wants to repeat the test (this one came back later negative too). NEW SYMPTOM: Bruce tells her he is having trouble urinating. She recommends he see his urologist and makes an appt for July 5. Bruce think it's his prostate, but he's only 53 yrs old.

June 25: Bruce has not been able to pee very well for several days and this weekend he started having some numbness around his groin area and the strange sensations (tingling, numbness, hypersensitivity) on the soles of his feet, so he finally let me take him into the ER on Sunday afternoon. A urinary catheter relieved 2,000 CC's (the nurses were amazed!) and he felt much better, but he still has the numbness, so they admitted him about 2am. After consulting with an infectious disease doc, a urologist, a neurologistm and the admitting Hospitalist doc, he had an MRI and tons of bloodwork that all came back clear, so we were very puzzled.

June 26: Another MRI this morning, this time "with contrast" looking for any spinal cord issues. Results show only a very small area on his lower spine that may indicate some type of infection. A quick exam by the infectious disease doc resulted in her best guess being that he has shingles! He had the two small patches of rash on his side last week that is now scabbed over, and NO pain which is classic for shingles, so I am still suspicious we are dealing with Lyme. The doctor totally disagrees that Lyme has anything to do with this. She says after 3 weeks of Doxycycline, he is cured of Lyme. She thinks the shingles virus has traveled from the nerve to cause some inflammation in the spinal cord causing the numbness. She and the neurologist order a lumbar puncture (spinal tap) to check for any infections that may be causing the numbness.

June 27: Preliminary results from spinal fluid show only two negative readings -- high protein (101) and high lymphocytes (79%), indicating some type of infection. Results of Lyme and other types of infections will not be back for a few days. They go ahead and start IVs with acyclivor (anti-viral) for the shingles, a steroid (Solu-medrol) for the swelling in the spinal, and a a bacterial antibiotic (Rocephin) for Lyme (or any other bacterial infection). And they admit they still do not believe this is the Lyme disease, but they are still guessing what is causing this.

I do an internet search for CSF (for spinal fluid), lymphocytes and protein and come up with a website that lists Lyme first as a possible diagnosis (all others were types of meningitis and other diseases that don't fit his symptoms). This is very frustrating.

June 28: It looks like they will let us go home after they teach him to self catheterize, and wait for the rest of the test results before we make any changes to his meds. The neurologist says that even if we can relieve the swelling in the spinal cord, it could take several weeks for the numbness to subside, but it SHOULD over time. Encouraging, but no promises.

June 29: Still all test results are negative-- including the one for shingles! The only test we don't have back yet is Lyme and the doctor said it would be in today or Saturday and she would call us. (The lab is in Salt Lake City) So, basically we still don't have a diagnosis for the infection yet. The Infectious Disease doctor released us home on IV Rocephin (2gm) every 12 hours for 7 more days and a pill for Acyclivor (800mg) 4 times a day. Not sure why we are still on the Acyclivor given the test for viral infection was negative, but frankly I want to cover all bases too at this point. Pray that the doctors come up with an answer for all this so we can be sure we are on the right treatment plan.

Bruce still can't feel to pee so he's doing in/out catheter every 4-6 hours. He's totally frustrated with it, but he's doing it and it's working. He tries to go by himself each time before he uses the catheter. Pray that the infection goes away and his feeling returns soon.

July 6: We are so disappointed and frustrated. In our follow-up visit today, the Infectious Disease doctor told us all tests she had run had come back negative, including the one for Lyme, and that since Bruce is not improved after being on the Rocephin for 10 days, she does not believe there is an infection causing this. She said there is nothing more she can do. I did show her my Mayo Clinic recommendations that a person with Lyme who has neurologic symptoms should be on Rocephin for 14-28 days and she VERY RELUCTANTLY agreed to run them for 4 more days. She thinks it is a total waste, but she did it. She also called the neurologist and asked him to see us sooner (than our Aug appt) because the symptoms were no better and she believes it is neurologic. She said this is very serious and that we may even want to consider going to Mayo for evaluation.

So, we did get in to see the neurologist about 2 hours later. From what I could tell by the plaques on his wall, he is actually a D.O. in Neurohealth. This was the doctor that our hospitalist neurologist referred us to for follow-up. He did a full-exam on Bruce and reviewed his records and MRI reports and .... threw up his hands too! Argh! He said this is transverse myelitis with no apparent cause. Transverse myelitis just means that a portion of the spinal cord is not functioning like it should. It also can mean the body's autoimmune system is causing his own cells to attack his body. He said all we can do is wait and watch. It could get better in weeks or months -- or years -- but probably it WOULD improve. He did say he was familiar with Lyme, and practiced for a while in the northeast, but did not seem to think it is related to what is happening to Bruce.

I asked him then about possibly going to Mayo or Cleveland Clinic and he agreed that it could be a case they would see...and he would support us getting in there. I only mention these because they have websites on Lyme, although these doctors still are convinced that is not what is causing this!

July 10: No real change -- Bruce still can't pee without catheterization, he finished his last of the 14 days of Rocephin (and I am terrified he still needs to be on it!). He feels pretty good overall, but still has the numbeness and tires easily. We are now working with our insurance company to determine where would be the best place for him to go next.

We would appreciate any advice on best doctors/hospitals, with particular specialties in Lyme and Transverse Myelitis. Thanks in advance!





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